My wife still has terrible shakes 5 months post Liver Transplant.

@kim1965 your comment/question brought me back to shakier times in my early post liver transplant experience. Did your wife experience shaking pre transplant, and/or episodes of hepatic encephalopathy? I did in spades, and post transplant I was alarmed that the shakiness was worse and lasted for several months. When I said, ‘enough’ to my team 3-4 months out, they shared that they could change me to a different formulation of tacrolimus (my primary immunosuppressant) that was extended release. They would need to appeal to insurance to cover it, as it’s much pricier and I said ok. However during this process the shakes subsided on their own. Somewhere in there my prednisone was dialed down and discontinued which may have related to my improvement. Who knows why. It’s so hard to experience that and I know that on some level it troubled my family more- they thought I was in pain. I hated having trouble writing, texting, cooking, maintaining balance, falling asleep but it did improve. Perhaps there is a better medicine formulation for your wife, or maybe her body is still adjusting/recovering. We are on powerful medications, especially in the first 6 months-1 year. Please share how this unfolds- I think this is an important topic especially within the first year of transplant. I never thought I’d stop shaking, I accepted it as my lot in life and now it’s a distant memory 3.5 years out. Likely it will be for you and your wife. Keep us posted!

@katebw thank you so much for responding, it's a big relief to hear your experience and eventual stop of the shakes. My wife's case is very similar to yours. About a month ago, after a very difficult first month and half with 4 surguries, her liver started a mild rejection/infection, and she was admitted again, but felt ok. After 4 days in her numbers starting improving again, as they put her back on prednisone 40mg, and the shakes never really left, but got worse being back on the prednisone. As the numbers came back in line, we slowly lowered the dose weekly per our team's instructions, and this should be her last week on them. Additionally, about 10 days ago, the exact extended release capsules of tacrolimus was finally traded out for the traditional version, and I read good things about it, but it takes time, and she about out of gas in patience, in terms of being limited to sitting in a chair all day, but some research we read, and your great information, hopefully will give her some relief in the coming months. We just went past 5 months post transplant, I'm hoping 6-9 months, we see some drastic improvement in the reduction of the shakes. I'm curious if you also had difficulty walking much more than a few minutes without having to sit down also? Anything, you can share is most appreciated.

@kim1965 it sounds like you are having some positive movement- that’s great. It’s hard to be patient, especially after all you’ve been through. A month feels like a year when you’re unwell, but 5 months out is really early. I did experience trouble with walking in the beginning- I’m remembering now that I feared I’d never be a normal or brisk walker again! But I am, gratefully so. My transplant was in late October and by March I took a Zoom class on strength and balance from a local physical therapist offering which helped me turn a corner. It took about 9 months post transplant for me to take a solid walk without trouble but several months after -perhaps a year post surgery I could walk for 45 mins-1 hour without needing to rest from fatigue. Today, I walk without feeling like anything terrible had happened! For context, I became ill at age 53, transplanted age 54 and I’m now 57. I had few medical problems before my acute liver disease and have always had good basic health habits though I’m human. Everyone’s recovery is different. Take your time, as much as you can. Healing doesn’t like to be rushed, apparently ❣️

I also had the Tacro Tremors post transplant. I found that strengthening exercises helped a LOT. Even if it is very small weights or a plastic water bottle, start with the arms and also eventually strengthening the legs by more walking or getting out of the chair (chair squats) as much as she can. Even if it is only 1-2 times every hour, it is a start on the road to rebuilding her muscles which will really help with strength, reducing the tremors and also reducing her risk of falling.

I was taken off tacro and my tremors stop, I could no read a paper I was holding I shook so bad. I was switched to rapamun with the myfortic I was always taking. Now I am down to just taking 2 in am and 2 in the evening of myfortic. Like I said over 10 years and still going well.

I also experienced tremors after my transplant in 2009. At that time I was taking prednisone, tacrolimus, cellcept in high(er) doses. As time passed and my doses were reduced, the tremors diminished for the most part. Except after my morning dose (8:00 AM). That is when I was really bothered by them. Usually lasted 2-2 1/2 hours, then gone! It was particularly bothersome if I wanted to use a pen or pencil, or needed to hold something fragile. The 8:00 PM dose never seemed to bother me as much.
I am currently taking tacrolimus and cellcept, and they are working extremely well for my transpoanted liver nad kidney. On occasion I do experience some mild tremors, that makes threading a sewing needle challenging. My body has been good at letting me know when my tacrolimus blood levels are going to be high, that is when I become unusually anxious, jittery, have difficulty concentrating, etc. And there have been a couple of times when, I self reported to my transplant nurse which resulted in an additional blood and tacrolimus level check. Adjustments are made accordingly along with another follow-up lab.

I have read where patients have shared taking meds with or without food. Othertimes, coffee has been mentioned as the culprit, with a suggested reduction in coffee or a temporarily discontinuing coffee for a few days.
Hoping for Only the best for each of you!